Out of Bed

Today was a huge day with some milestones. At 5:45 a.m. 4 nurses helped Danny move from the bed to the chair. It was pretty intense because of the huge spider web of IV lines and other cords/tubes attached to Danny. It truly took all 4 nurses working together to help him stand up and not pull anything out. Currently, he is not allowed to push or pull with his arms, so they had to help Danny stand. The #1 concern is the LVAD (pump) power cord. If that comes unplugged before it is connected to at least one battery, the pump will stop and Danny will die. He was clearly scared about moving and asked the nurses many times if he was going to stay plugged in. They were very patient and kind and reassured him each time he asked...God please give me that kind of patience when I'm his nurse at home. 

He rested in the chair all morning and about lunch time 2 physical therapists arrived. His PT for today was to stand up (with assistance) for 30-60 seconds, twice. That completely wore Danny out and he fell asleep again after that.

After Danny was shocked by his defibrillator a couple of weeks ago, the psychologist on the transplant/LVAD team put Danny on an anti-anxiety and sleep medicine. She did this because he was having nightmares about being shocked again and was terrified to go to sleep. This morning Danny asked why he didn't get that medicine last night and the surgeon told him there is no way he can have it. He told Danny to choose between the pain meds or the anxiety/sleep meds. Danny, feeling unhappy, chose the pain meds. Danny is really struggling with anxiety. He is scared to fall asleep, about the pump breaking, pulling the IV cords, becoming unplugged, or discharged, etc...I don't blame him. Being dependant on machinery to stay alive has got to be scary. He has asked me to pray with him more times than I can count today. God is definitely able to replace Danny's anxiety with peace!!

He is also struggling with pain. We were told today that the younger, thinner, healthier LVAD patients experience more pain that do the older ones. This is because they have more muscle tone and use those muscles without realizing it after surgery and it just hurts. The older, weaker people are not accustomed to using the muscles prior to surgery, so it's not a problem afterwards.

I started reading the LVAD user manual today...it's about an inch thick! I gotta say that this is stressful! Mistakes in dealing with Danny and his LVAD are not just "don't cry over spilled milk" mistakes; they are potentially fatal.

I learned that it is crucial to only unplug one battery at a time (he has two in use when he is not plugged into the wall) when changing from battery power to wall outlet power. If I mess up and unhook both batteries at once, I will kill him. That's just scary. I feel like the more I learn about caring for him, the more unqualified I will think I am. I watched his first dressing change today...I will start helping tomorrow and eventually I will do it alone with the nurses watching. The nurse stressed over and over again about making a sterile field because if I didn't and germs got into the driveline hole, infection would go straight to his heart. That's an unbelievable amount of pressure. Just think about it from Danny's view...he has to completely trust his caregiver--with his life! 

~Tricia

Prayer requests:

Danny: anxiety, sleep without nightmares, peace

Tricia: sleep/feeling rested, ability to learn everything I must learn prior to discharge

Praises: 

Danny: Moved to chair today and stood up with PT twice

Took away a few of the IVs